Dad

[MovingClouds]

Hello, there. I know my screenames pretty weird. I didn't want my family knowing I am posting on threads. I know my mom'd be upset, cause she doesn't want me to know some things, I do...

My dad has ALS. I found out over winter break, and things have just been.....so stressful. I know, i'm not the only one. And I don't have this disease. But its my dad. I'm sorry for ranting. I'm glad this forum is here. It makes me feel unalone. I hope I can help you guys, as much as you'll probably be helping me...

Um- okayy......i'm going to just rant somethings out. Advice to remaining stress-free, would be nice- if not, its okay though lol, sorry for ranting.

1- My sister is in college, and shes probably taking this really bad. If you don't do one thing around the house before she comes home to visit, she gets really, really mad saying that dad is sick, and that he can't do this, and we should be thankful he even cleans (Which I am) which just adds on to the stress.

Most of the time, I try to pretend my Dad doesn't have it. I'll just go on with the day normally, and whatnot. But- when my Mom gets really stressed she'll yell something like to me and my younger brother-

"Your DAD is sick! With a disease! You should be treating him better, you should not be fighting when your dad is so sick!" And its like-...mom, I know he's sick. I'm trying to act normal around him, but you're making it so, so hard to do that, AND I'M SO SICK OF IT!

i could go on for hours just mentioning how sickening this disease, family, and everything is. But I think you guys already know this.

My dads always been so strong, and seeing him need to ask people for help, and seeing my mom who NEVER cries (always yells, ha ^^: ) cry-
it just kills me.

my mom tells me not to mind what my dad says because he cant control it, my dad tells me not to mind what my mom says because she gets angry alot, and its just-

They're both my parents! How can I not mind what they both say?! My mom is usually nice and stuff in the morning
but in nighttime shes really stressed out, doesn't want to talk to anyone, cries, goes to her room, everything.
I feel like I can't even express how sad I am. Because I don't want to make my mom sad, and give her more reasons to cry. And I want to be strong for my brother.

And its just- I haven't really gone all out and ranted to someone. I've only told two of my friends, and I just told them about the disease generally. I can't talk about it, when I do I just get depressed, and I hate that feeling. I hate thinking my dad, who's always been strong, is going to not be there someday. I know we all pass on at some point-

But I wish my dad wouldn't have to pass so soon. I wish the doctor would call us up right now, and tell us my dad doesn't have this disease. I wish it was something curable. I always think they'll come up with a cure for it before something happens.

blah.
Sorry for the rant. I'm just your over-emotional teenager.
Thanks for listening anyway : /

Any tips on how to help my family be not so stressed?

 

[joelc]

Your dad does not have to pass anytime soon.

Read through our website. Living and Surving with ALS You can read about how we have dealt with an ALS diagnosis. Life does not have to be over yet.

Take care and don't hesitate to ask all the questions you want. We will try to help as much as we can.

 

[GlenBrittle]

Hey there,

I am sorry that your Dad is going through this terrible disease.

Please rant and ask as many questions you want to.

Has your Dad been to an ALS rehab clinic? They have people that will help your Dad, your Mom, and even you understand what is happening, and what is going to happen. These people are there to help your family.

Joel's website is a great source for information, as is this forum. Most of us are not doctors, but we have a wealth of information from real experiences that PALS (people with ALS - like me) and CALS (caregivers of people with ALS)

You are not alone in this.

I do not understand why you should not be looking into your dads illness, but offer a warning that you can find too much bad information (Dr Google) and people that will sell you hope of a cure. If they offer something for money , walk away - there is no cure yet.

Its all about a positive attitude and energy conservation.

Maybe your Mom and Dad would feel better if you showed them this forum, which is maintained by wonderful people. Joels website - shown above - is also a great place to get info. Joel is one of most respected people in this forum.

Come back soon.

Glen

 

[MovingClouds]

Thank you for the link

 

[BethU]

I'm so sorry your family has to go through this. ALS is really, really hard on families.

Is there a counseling office at your school, or a teacher you are close to, where you could talk to someone one on one? If not, keep talking to those two friends you trust. And I'm glad you reached out to us. Keeping it all bottled up will tear you apart.

Keep posting here, and let us know how things are going. I'm sure some of our caregivers will have practical tips for you.

Hang in there. You have a new family here on the forum, who will try to help you through this.

 

[MovingClouds]

Thank you I'm not sure if Dad has been to a rehab clinic- i'm assuming he is. They've given him a strong dosage of medicine to help pains and things.....my Mom and Dad aren't telling us about this too much. Dad didn't even want us to know. But I want to know what my Dads going through, and how I can help- and I think a forum is a great place to go, because its full of people going through the same thing you are.

Yeah, I plan on telling my mom about these forums, so not only she can have people to relate to (and not be so stressed) but she can get advice on things. Thank you for the tips, and thanks for telling me the google advertisements.

 

[Twinsmom]

Hi there Moving Clouds,
I totally understand the stress you are under. We just told my daughters over winter break about their step-dad, but they aren't home for the everyday stress like you are. They are both away at college like your sister. You sound incredibly strong and mature-and very understanding! This is a huge challenge for everyone. Your parents are very fortunate to have your understanding...even if they can't express it right now, trust me on this one. I'm the mom and caregiver, so I can relate to your mom's stress, but also know how much I want to be able to protect my kids, but sometimes, since my girls are so mature, I forget their kids, and put more on them than is fair, really...which sounds like what you're going through

I would encourage you to reach out to a counselor at school or teacher you trust. Having another adult you can lean on will be an important part for YOU to handle the stress that you go through.

If you want to talk one on one, don't hesitate to contact me by clicking on my avatar and send me a note. Hang in there, kiddo. You can also email me at [email protected]

Peace,
Melody

 

[thelma313]

Hi, I am also really sorry that you have to go through this at your age. I am also the daughter of a wonderful dad with ALS so I do know how you feel. Glen is right, you are not alone.

I am so glad that you found this forum. I stumbled upon it only one week after my dad was diagnosed. I was having a very hard time accepting the diagnosis and communicating with the people here helped a lot!

If I have any advice to give you it is to spend a lot of quality time with your dad. Like Joel said, he may very well be around for a long long time but an ALS diagnosis puts life and relationships and the importance of telling your family members how much you love them into perspective. Also you need to take very good care of yourself so I hope that there is someone at your school that you could talk to. You are a very sweet daughter to research information about your dad's condition so by all means, ask anything you want and come here to vent and express your feelings ok? We're here to help!

Big hugs to you!
Rosella

 

[brooksea]

I really appreciate your contribution to this forum! It is great to hear from a child of someone affected by this. You have probably summed up a lot of what we go thru as parents - it is so very stressful sometimes. But, you need to talk to your school counselor, as Beth has suggested.

We have a son that is 9 years old and he too is having difficulties with the changes that his father is going thru.

I've reached out to the school and they have given me further resources in the community, so I think your school counselor or administrator would be a start. You ARE mature enough to seek out their help.

Sending you HUGS! I wish I could make it better for you and all of us!

 

[BarryG]

Hi MovingClouds, I am very sorry about your dad and I hope that we will be able to help you and your family. The ALS society in your area may be able to help you and here is a link to a site that the ALS society of Canada has set up for teens and young adults, maybe it will help you.

als411 for Teens / Young Adults

Any time you want to talk or rant, that is why we are here.

 

[handinhand]

Hi, I am so glad that you have found this forum. I am a mom with ALS and I also have six children. i worry about them every day. Wondering what they must think and trying to keep a lot from them. Which they usually get everything out between the six of them. I have found that they need to know most everthing that is going on with me. Easier than too much information at one time. Try to be patient with your Mom. She is having a really hard time right now. You have shown just how bright and smart you are finding this forum and writting what you have to let us into your heart. And you did. We are hurting for you and your Dad and Mom ,family. This is one of the hardest things you will go through. You can do it and we will help you all we can. Please go to your school counselor? You need someone to talk to often. Friends are great but you need to find an adult ,also if you belong to a church maybe someone there? Please let us know when you find someone?/ OK? I will be waiting to hear back from you.. Big HUGS, Linda

 

[Blubear]

Hi Clowdy, I am really impressed about how mature you are! Being a teenager is confusing enough without having to deal with what you are dealing with. Know that your mom and sister are yelling because of what is called "displaced anger" and dont take it personally. It is just how they are handling the diagnosis of this disease. Try hun, to remember that stress is not good for this disease either, and can make your dad progress a bit faster. When and if you find the right time, I would talk to mom and tell her just what you have told us here. She may get a better sense of where YOU are coming from. My daughter who is 20 is acting the same way as you. (Its her favorite person on earth - grandpa - my dad who has ALS) She just wants life to go on as usual. It has made me angry at her these past few months, however I have come to realize that everybody processes things differently. No two people are the same. There is no "correct" way to handle it, you just handle it in your way. Me, I just want to curl up in my dads lap and stay there. He is such a strong man, how could this be happening to HIM of all people?! I know I cant do that, (I am 47 years old for heavens sake!), but I do know from losing someone dear to me before, that time with your loved one is precious. Try to be calm, and soak in the moments with your dad as much as you can. Everyone here is really giving you good advice as far as talking to a school counselor. It would really help you having an adult to vent and to just talk to about all of this. It is such a heavy load for anyone to handle. Welcome to our family here sweets! PLEASE keep us posted on how you are doing.....we already care about YOU!
Hugs,
Kari

 

[tdamess]

it is very hard being a teen ,how old are you ?... parents forget sometimes that children see and hear things and put them together but , they mean well .. i have been yelling a little myself.. my best advise and it is hard to do but , try to keep yourself as normal as possible with a little awareness of when you need to help out do an extra chore or 2 around the house sit with your dad a little more , walk by mom and give her a hug also .. when she is crying let her know you are hurting also ask her if you can cry with her and other times go be with your friends like i said it is hard to try and balance and more so when your a teen ... follow the advise above for the teen site and counselors at school can help some .... keep the faith ... a show of support and a lot of love will help the whole family... and we are all here when you need us

 

[irismarie]

Moving clouds - what a great and imaginative name!
I second all that has been said. You are smart to have found this site and are clearly a young man of sensitivity- though I bet you wouldnt want your friends to know that,-)
Why not talk to your parents and tell them that you know and that you want to be useful? I can just imagine how proud your parents would be of you and you of yourself. The stress and the hell of your father being ill and of losing him will not go away, but a huge lesson to learn right now is that it is not what happens to you in life that matters, but how you DEAL with what happens. That way you can always live with yourself, no matter what.
I think you are a great young man and your parents and your sister would only be proud of you right now if they knew you had cared enough to write here.
Sending you and your family heaps of love
Irismarie